I am just feeling my way through this and trying to handle DS - I am so totally overwhelmed

[senatorvass]

I have been posting recently about problems my DS is having, emotionally. He is getting EXTREMELY upset and totally unable to be reached and I am so so so upset I just dont know how to help him. We see Peadiatrician tomorrow so will be in the process of getting a DX but for now all I know is there is something really wrong and I dont know how to cope. You know... he just loses it. I put his cheerios in the "wrong" bowl and he flipped for about an hour and ended up rocking back and forth in the bathtub.

Today - same thing. He is so upset and crying and everything is wrong, the order of everything is wrong its just awful. He is 2.6.

He has just stopped crying after crying for about an hour and a half and it all sparked off because of little things, like a cheerio fell out of his bowl and one of his little play people fell over and its just been awful. I just cant get through to him. I am so upset.

This has been going on a long time but getting worse very quickly now but we are probably still a while away from getting a DX and help and I dont know what to do in the meantime. How do I cope?

He is now throwing things at me and shouting "no!" and I dont know why.

he was throwing it at me because Pingu was upset. This is the thing. Any time something is REMOTELY negative he flips.

Maybe he is overwhelmed because of Christmas? I know at that age my dd found it very hard. Is it asd that your child is being assessed for?

I am sure xmas didnt help but this stuff has been going on for a long time but it has got considerably worse in the last 3 months. I think HV is thinking ASD, yes. But I think they are just going to look at it from scratch and see what they think it is... but it seems an ASD thing... I dont know. I am so just... I dont know. I dont know. Its just so hard he is so unhappy.

Christmas can be a hard time - lots of change, etc.

You say you put his cheerios in the wrong bowl - do you know what the "right" bowl is?

I would be tempted to reduce "known" stress-inducing things as much as possible. Dd1 used to have to have the same bowl/cup/toy in hamd whenever we went out. She treated them all as security objects, and we went along with it as far as possible.

She is now 4.4 and doesn't need all these things as rigidly the same (although, at known times of stress, like Christmas, I still try to keep unnecessary new things away from her)

no I dont know what the right bowl is. I should. But I cant work it out. The only trigger I know of for sure is that if anyone is upset - or even if you are reading a book and the word "cry" is in it, or a cartoon, or anything - he flips. He screams and throws things and if its REALLY bad - (like a baby at playgroup crying) he stands there and cries and screams as if he is being murdered. So I obviously try to keep things happy around him. But you know... I read "hush little baby" to him and he screamed because the word cry was in it. I didnt expect that.

And now little things will set him off and I just cant keep up with them. I just dont know what is coming next. Everything has to be PERFECT for him... I dont know how to do it.

and I know its not attention seeking. He is miserable when this happens. He cant control it. I know that. He is my child and I know him. And I know there is something wrong with him, in his head, or emotionally, or both. I have spent the last 6 months being told by HV to put him in TO for all of these infractions, that he was just acting out but I know now that is wrong. He cant help it.

So how do I have some shred of dicsipline and control and avoid spoiling him when I know now that he has got special needs.

I didn't mean that you should know which bowl was right - sorry, that was clumsily put. I was wondering whehter your ds had a known preference.

dd1 used to hate other children crying (still does). In her case it is partly a hearing sensitivity, so the noise really is intolerable.

How is your ds's understanding? The reactions to negative emotions must be incredibly hard - as you say, it pops up everywhere.

There are a type of story called social stories. I haven't really used them much, as dd1 hasn't (until now) really been able to understand them (severe language delay) - maybe one about emotions, and how i is ok to feel sad sometimes, and how feeling sad can be made better would be useful?

There are lots of peole who know more about social stories on this board, hopefully they will be able to help more.

Another thought - again linked to how verbal your ds is - is he able to express his emotions well (other than the melt downs)? Dd1 (I think, it really can be impossible to tell) used to latch onto others' sadness/upset sometimes as a release for her own frustrations, as she was not able to voice her emotions well. And so the mention of sadness might be releasing his frustrations over the wrong bowl/cereal/etc.

thanks Dont worry I know you werent saying I should know about the bowl! But I feel I should.

He is very verbal. It sometimes seems there is nothing he cant say. But when I try to talk to him about emotional things it doesnt seem to get through to him. Sometimes you think he is understanding what you are saying but it doesnt change the behaviour.

I wonder if part of this is SPD - hearing sensitivity - as well. But I just dont know. I know his eyes are very sensitive. He hates bright light.

He is constantly asking me and his Daddy if we are happy. And I mean - constantly. Its almost oppressive!

if your gut feel is that he cannot help it, I agree with you that he shouldn't be put in TO for it.

He is not attention seeking - he is telling you that something is wrong and he is upset.

I think that the only way i got through dd1's earlier days (when I really couldn't tell what was happening) was to have a rigid routine, which was rarely deviated from. So the same things at the same time, every day (how I didn't go mad, i don't know!)

If he is very verbal, then social stories might work well. Try doing a search for them, and see what you think.

I have been at the opposite end of the spectrum, with dd1 not being able to tell me what was wrong or why, but the results are the same - one sad little child who needs us to put it right as far as possible.

I have been where you are wrt to feeling I should know what is wrong (and I still do feel that way - I had a heart to heart with dh over it just the other night) but in all honesty, you can only do what you can do. I have reall yrun myself ragged trying to keep up with dd1's sensitivities and foibles. Sometimes it pays off, and other times something new pops up.

When dd1 was you ds's age, the only thing which would calm her down was me singing frere jacques to her. On one memorable day, I was singing it non-stop for 4 hours before I had to call a halt.

Dd1 has a behavioural consultant, and he has said to me to not be afraid of the tantrums. dd1 has a huge need to control everyhting, and does similar repeated questioning - it drives me insane! the advice from the consultant is to answer, then ignore any repeated questions,and gently try to turn the conversation - easier said than done! I all too often fall in to the trap of repeatedly answering, and tbh, there isn't enough time to satisfy dd1, she would go on asking for ever. Is it possible to deflect you r ds when he starts repeatedly questioning?

funny I sing to my DS constantly!!!! We must be on to something.

My DS will repeat himself over and over and over again until you repeat back to him what he has said. Its very strange. Like a constant echo.

I just put him down for his nap, thank god part of his rigid routine is a nap every day at this time so I get a break!

OK, hmm, thinking...

Music. It's one thing that can really help, because tunes are repetitive and reliable and predictable. I had the good fortune to be given piano lessons when very young and a family who rescued an ancient wreck of a piano so I could practise my playing. It was an escape for me when life was too stressful, and even now I use piano as a way to calm down. Same with music tracks - if stressed I'll play the same track 10, 20 times over if I know it won't drive the rest of the family to distraction. Kid's Headphones and a robust music player might be an answer, for example.

Trying to think how to explain what happens in our brains (assuming he's ASD, which is a big assumption but let's just assume it for a minute anyway). In brains, there's a bit called the amygdala. It recognises emergencies and anything unexpected and angry faces. When it sees any emergency, it hits a big red Panic Button in the brain. OK, not a real one, but you know what I mean.

Now in an ordinary brain, immediately the brain's filing clerk appears, takes the info about what's going on, whizzes over to the filing cabinets in the brain to find out what it might be like/who it is that's angry, and whizzes back again to say "hey, it's ok, no emergency here - switch the Panic Button off again". Only takes a couple of seconds as most people have brilliant people-and-emergency filing systems. (Ok, there isn't really a filing clerk either, but there's a bit of the brain that does exactly that).

In our brains, the info on the emergency/something unexpected comes in, the amygdala bit of the brain presses the Big Red Panic Button, and, umm, er, no filing clerk. We don't have one. Imagine what sort of mess the filing's in, too. "Red Alert! Emergency! Er, excuse me, anyone there? Anyone got a clue why this has happened?" Nothing. So...we have to go look, painstakingly sorting through all the paperwork scattered all over the floor. It takes AGES and is very exhausting, and meantime we've no clue how dangerous the situation is, because we can't find the bloomin papers that tell us if it's a tiny thing or a huge great thing.

Result - loads of fear, loads of crying.

What helps - a) knowing this b) keeping things as predictable as possible c) helping us to work it out. This is where the visual things are handy, e.g. if it's a tiny emergency, holding up just one finger. If it's a big one, holding up all five fingers. Also, minimising all the incoming info - no talking to us, no eye contact, no extra noise, no changes...just let us calm down. A heavy blanket or coat on us can help a lot, or a thick duvet to wrap round ourselves. The rocking is a way to block it out, too.

Then wait. And know you're not a bad parent and didn't cause this.

amber that is a really well explained post - thank you very much & I am taking it all on board.

He just got upset because (again) I brought his food on the wrong plate. So as I was piecing it together and correcting it I noticed he was flapping his ears as he was sort of crying & explaining it to me. I have noticed this before but never paid much attention to it. I read a couple of days ago its a sign of ASD. And honestly after I read it I forgot it. Now he got upset and started doing it and it hit me like a ton of bricks. Its really happening isnt it.

Sorry he got upset re: plates again.

Would you be able to talk to him about the plates at non-food time? Ask him which ones he likes and which ones he doesn't? He might see some of them as breakfast plates, some as lunch and some as tea, maybe?

I know what you mean about it hitting you like a ton of bricks, but underneath, he is still your little boy. the same little boy he has always been.

Singing is good - I honestly used to spend whole days singing to dd1. Dh & i used to have conversations to the tune of her current favourite, as she didn't like us to stop singing, and we wanted to talk, so we put everything to music - god knows what the neighbours thought

Are you in the process of being referred at all?

I also agree about the nap - dd1 still has a rest after lunch - gives me a well earned break . She is exactly like your ds - repeats soemthing endlessly until you repeat it back to her. I used to have endless patience for it, but now that dd2 is learning the habit, i am working hard to break it - I cannot cope with the pair of them parroting at me all day

silverfrog I just am surprised I am here. I mean it isnt an awful place or anything so you know... I am not so much as complaining as very surprised. That all these months I have been beating myself up for parenting badly & being told by HV he was going to be spoiled etc now all of a sudden I know its a legit thing and yeah... I am going to have to change the way I parent and think of things.

Tomorrow we see a peadiatrician - its actually for a constipation problem he had ages ago but I am going to unload it all on the DR then and try to bypass the GP altogether as I dont have a great opinion of my GP. I am compliling a list of all this stuff to take with me tomorrow.

How funny we do sing constantly - AND we do the same thing you do, we have conversations in song!! Wow I am glad actually we arent loons on our lonely loony island!

How old is your DD1? My DS is going to be an only - we decided that ages ago because we felt he was so much work we couldnt cope with another and he goes mental if I ever hold a friend's baby.

oh and I am going to have the plate talk!

One of our conversations was about dire financial situation and whether we were going bankrupt - all to the tune of Twinkle Twinkle!!!!

I am glad you have an appt so soon. i know it's about something else, but as you say, you can offload, and hopefully leapfrog into the system. Taking a list is a great idea. Have you seen the CHAT test? It is a test designed for children a little younger than your ds, but does flag up some developmental issues (and if you score it for when he would have been the right age, then you might get an idea, iyswim?) link here.

dd1 is 4.4, and dd2 is 22 months. dd1 was a breeze as a baby compared to dd2 (NT toddlers seem to get everywhere - picking things up, touching things, opening drawers/cupboards in the kitchen. I never had to babyproof the house for dd1, and now dd2 is into everything)

Please try not to beat yourself up over this (easier said than done, and I have done my fair share). It is not anything you have done/not done. HV's can be so useless with this sort of thing. I saw one when dd1 was a baby (from about 10 months old, to around 17 months) who told me that dd1's ability to play with one brick (picking it up and dropping it, again and again) for over an hour was a blessing, as at least i could get things done around the house .

Thankfully I then moved house (and area) and my next HV took one look at dd1 and referred her on (in a nice way).

Earlier on you said your ds was upset that one of his toys had fallen over - can you play games where falling over is the point? (tower building, etc) to help him see that it isn't a bad thing and that you can start again? And try talking about it when you drop something (eg loading the washing machine, and "drop" a sock. unloading dishwasher and drop a fork etc?) and then he can see how you deal with it, which might help him sort out his emotions on it?

i know there have been threads before (both in SN and in behaviour, i think) on children who hate making mistakes such as these. I think they were about older children, but soem of the advice might apply?

Ok, try not to panic, easier said than done I know. Now you are aware of your ds' issues in relation to ASD symptoms it's easy to start linking everything. I know this from experience.

Have you thought about his diet? This made a massive and very quick difference to my ds. We worked out (by accident) he was having a huge reaction to aspartame (found in Robinsons sugar free fruit juice).

Children with ASD can often react to gluten, casein, MSG and aspartame. If I were you I'd knock out as much artificial colourings, additives, artificial sweeteners as possible. You may not realise you're giving him any MSG/aspartame at all (I didn't!) but they're in all kinds of sweets, crisps etc. It may be he's eaten a slightly different diet than usual over XMas and this is making his symptoms much worse than usual.. does this make any sense?

thanks kettlechip - I dont know about colourings but I do know he has no aspartame. I have terrible migraines & it doesnt agree with me at all so we never have it in the house at all - My DH also believes it is linked to cancer so he is really careful DS has never had it. I dont even really know what the other things are that you mentioned... I mean I have heard of them but dont know what they are in so I will check.

I like the idea of doing falling down games too - now that you mention it he doesnt mind when his bricks fall down and he often "pretend" falls down. I think its when something is supposed to be in an order and its not that is the problem.

kettlechip is right - diet can have a huge impact on behaviour.

dd1 is gluten (found in wheat, oats, barley, rye) and casein (the protein found in dairy products). Since we removed those from her diet, we have seen huge improvements, and if she gets hold of some,we know by her behaviour.

It's great that you are anti aspartame - all other artificial sweetners are bad news too for dd1.

MSG is the hardest thing to avoid - it's everyhwere. even something labelled as having "natural flavouring" (so most fruit bars/fruit flakes etc aimed at children) contain MSG (it can have a natural source as well as a chemical source)

Before we started dd1 on a restricted diet, her worst melt downs (I can see now, with the benefit of hindsight) - the ones where she was absolutely inconsolable for a few hours - were down to coming down off the high that gluten and casein gave her. Not saying it's the case with your ds, but maybe somehting to bear in mind?

I will bear it in mind. How do you rule it out, just by trial and error? I meant to say we do exclude ALL artificial sweeteners. I can taste straight away if they are in something and it makes me feel sick.

we did a urine test from the Autism Research Unit at Sunderland here

It costs about £60, but I think they can make arrangements to spread cost if needed. They are really nice people - very helpful.

We sent off dd1's sample, and the results came way off the scale for gluten intolerance and probable for casein intolerance. Since dh has a lactose intolerance we cut both out straight away (2 years ago now) and have seen improvements day by day.

wow thats great! If he does get the DX I am expecting I will definitely get that test done too! Why not? I mean it could save you a lot of heartache.

wow thats great! If he does get the DX I am expecting I will definitely get that test done too! Why not? I mean it could save you a lot of heartache.

sorry for dbl posting laptop keeps playing up!